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EULAR recommendations for terminology and research in individuals at risk of rheumatoid arthritis: report from the Study Group for Risk Factors for Rheumatoid Arthritis
  1. Danielle M Gerlag1,
  2. Karim Raza2,
  3. Lisa G M van Baarsen1,
  4. Elisabeth Brouwer3,
  5. Christopher D Buckley2,
  6. Gerd R Burmester4,
  7. Cem Gabay5,
  8. Anca I Catrina6,
  9. Andrew P Cope7,
  10. François Cornelis8,
  11. Solbritt Rantapää Dahlqvist9,
  12. Paul Emery10,
  13. Stephen Eyre11,
  14. Axel Finckh5,
  15. Steffen Gay12,
  16. Johanna M Hazes13,
  17. Annette van der Helm-van Mil14,
  18. Tom W J Huizinga14,
  19. Lars Klareskog6,
  20. Tore K Kvien15,
  21. Cathryn Lewis7,
  22. Klaus P Machold16,
  23. Johan Rönnelid17,
  24. Dirkjan van Schaardenburg18,
  25. Georg Schett19,
  26. Josef S Smolen16,
  27. Sue Thomas20,
  28. Jane Worthington11,
  29. Paul P Tak1
  1. 1Division of Clinical Immunology and Rheumatology, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
  2. 2Rheumatology Research Group, MRC Centre for Immune Regulation, Institute for Biomedical Research, School of Immunity and Infection, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK
  3. 3Department of Rheumatology and Clinical Immunology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands
  4. 4Department of Rheumatology and Clinical Immunology, Charite University Hospital, Berlin, Germany
  5. 5Division of Rheumatology, University of Geneva School of Medicine, Geneva, Switzerland
  6. 6Rheumatology Unit, Department of Medicine, Karolinska Institute and Karolinska University Hospital, Solna, Sweden
  7. 7Academic Department of Rheumatology, Division of Immunology, Infection and Inflammatory Diseases, King's College School of Medicine, London, UK
  8. 8GenHotel, University Evry, Clermont-Ferrand, France
  9. 9Department of Public Health and Clinical Medicine, Rheumatology, Umeå University, Umeå, Sweden
  10. 10Section of Musculoskeletal Disease, Leeds Institute of Molecular Medicine, University of Leeds, Leeds, UK
  11. 11Manchester Academic Health Science Centre,The University of Manchester, Manchester, UK
  12. 12Department of Rheumatology, University Hospital, Zurich, Switzerland
  13. 13Department of Rheumatology, Erasmus MC, Rotterdam, The Netherlands
  14. 14Department of Rheumatology, Leiden University Medical Center, Leiden, The Netherlands
  15. 15Department of Rheumatology, Diakonhjemmet Hospital, Oslo, Norway
  16. 16Department of Rheumatology, Medical University of Vienna, Vienna, Austria
  17. 17Department of Immunology, Genetics and Pathology, Uppsala University, Uppsala, Sweden
  18. 18Jan van Breemen Research Institute, Department of Rheumatology, Amsterdam, The Netherlands
  19. 19Department of Internal Medicine 3, University of Erlangen-Nuremberg, Erlangen, Germany
  20. 20National Rheumatoid Arthritis Society, UK
  1. Correspondence to Danielle M Gerlag, Division of Clinical Immunology and Rheumatology, Academic Medical Center/University of Amsterdam, F4-105 PO Box 22700, 1100 DE Amsterdam, The Netherlands; d.m.gerlag{at}amc.uva.nl

Abstract

The Study Group for Risk Factors for Rheumatoid Arthritis was established by the EULAR Standing Committee on Investigative Rheumatology to facilitate research into the preclinical and earliest clinically apparent phases of rheumatoid arthritis (RA). This report describes the recommendation for terminology to be used to define specific subgroups during different phases of disease, and defines the priorities for research in this area. Terminology was discussed by way of a three-stage structured process: A provisional list of descriptors for each of the possible phases preceding the diagnosis of RA were circulated to members of the study group for review and feedback. Anonymised comments from the members on this list were fed back to participants before a 2-day meeting. 18 participants met to discuss these data, agree terminologies and prioritise important research questions. The study group recommended that, in prospective studies, individuals without RA are described as having: genetic risk factors for RA; environmental risk factors for RA; systemic autoimmunity associated with RA; symptoms without clinical arthritis; unclassified arthritis; which may be used in a combinatorial manner. It was recommended that the prefix ‘pre-RA with:’ could be used before any/any combination of the five points above but only to describe retrospectively a phase that an individual had progressed through once it was known that they have developed RA. An approach to dating disease onset was recommended. In addition, important areas for research were proposed, including research of other tissues in which an adaptive immune response may be initiated, and the identification of additional risk factors and biomarkers for the development of RA, its progression and the development of extra-articular features. These recommendations provide guidance on approaches to describe phases before the development of RA that will facilitate communication between researchers and comparisons between studies. A number of research questions have been defined, requiring new cohorts to be established and new techniques to be developed to image and collect material from different sites.

This paper is freely available online under the BMJ Journals unlocked scheme, see http://ard.bmj.com/info/unlocked.dtl

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Footnotes

  • Handling editor Johannes WJ Bijlsma

  • Funding This work was supported in part by grants from the EULAR, the European BTCure IMI programme, Dutch Arthritis Foundation and ZonMw.

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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